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Rory Gardiner's Webpage

12, Nov, 2009

Thursday 12th November 2009


 

It looks as though Rory may be discharged to the RM apartment in the next 2-3 days, and we may get him 'home' to Whakapara by the end of next week, although nothing is ever definite around here until it happens.  The mere thought of being thrown back into ordinary life has left Sean and I a bit stunned.  There are many big questions we have put on hold, primarily 'where to from here' and 'how are we going to do this'.  The boys currently have no school, we have no home, and we do not know what capacity we can return to our previous jobs.  Ahead of us is also the long road of Rory's remission, involving a neuro-developmental therapy programme, a physiotherapy programme, a drug regime, hearing aids, and regular monitoring at Starship.  Life on the outside from where I sit looks and feels pretty daunting.  I know the only way we can go is forward, but it will have to be with baby steps, testing the water as we go.  I think we are all too fragile to do it any other way. 

Rory and Sean had a restless night.  The alarms on the pumps went off regularly, are particularly loud, and rarely seem to be in unison.  As a result they both dozed till 7.30am.  Sam and I enjoyed a run around the Domain.  I always enjoy running along the front of the Auckland Museum, there is something powerful, majestic and meaningful about the building. 

Rory's bottom is still sore so he spent the day undie-less, wearing a pyjama top and a towel toga.  It is likely he is ulcerated 'inside' as he passed a couple of tablespoons of blood this morning.  The Doctors have increased his pain relief, and he received another platelet transfusion today to stop the bleeding.  The Doctors have said as his immune system recovers it will heal on its own.  Rory received GCSF today and his white blood count has increased to 0.56, so things are going in the right direction.  We have passed the day playing board and card games, drawing, reading James and the Giant Peach, and playing Jak and Dexter on Lyn's PS2 which is being fitted into Rory's ward room.  Our nurse today, Holly, had a brain tumour (albeit a different type) when she was 7.  She featured in one of the Sunday newspapers a few months ago.  It has been good for Rory to meet an adult doing an important job who has been through some of what he has.  Sam has been at school at RM House today.  This morning the class made pizzas.  Sam has become firm friends with Noah, whose little brother Elijah has leukaemia.  I am glad he has found someone, the two older brothers are good support for each other while their lives are adrift on a stormy sea.  This afternoon after school they were swapping Pokemon characters on their Nintendo DS's (it is beyond me!). 

Rory had a visit today from Amy, the Dietician.  Rory will return home with the ng tube.  We will have to support and encourage him to eat and drink normally, and weigh him regularly.  The more he eats the less milkshake we will have to give him, until eventually he doesn't require any and the ng tube can be removed.  How long this takes is in Rory's hands.  He knows he can have it removed as soon as things are back to normal.  Achieving this is harder for him than anyone can appreciate.  Rory associates food with vomiting and diahorrea, and has spent the past four months with little in his mouth or stomach.  The act of eating and drinking feels foreign, even a little food feels like a lot so he feels full, his stomach regularly revolts, and his head tells him he doesn't need to eat.  We will all have to be patient. 

Rory also had a visit from Dr Stephen.  We made an appointment to see him in clinic on Monday afternoon.  Infectious diseases (ID) will advise how long Rory has to continue the antibiotics.  It is likely two will cease, and the Vancomyacin continue for a few more days.  This drug can be locked into his Hickman line once per day by a nurse.  Rory will need to have twice weekly blood tests to determine when the GCSF can be stopped, and the insuflon removed.  His white blood count and neutrophils have to be high enough.  Rory will have a hearing test early next week, so we can get the wheels in motion if he needs hearing aids.  Dr Stephen gave us a choice about whether we wanted to have the MRI of Rory's brain and spine in December or January.  Either choice has benefits and pitfalls.  If the MRI is done in December and no cancer is detected it is great news, but if cancer is found it will ruin Sam, Sean and Grandad's birthdays, and Christmas.  If the MRI is done in January it gives us all a chance to enjoy Christmas and the holidays, but there would be an unknown hanging in the air.  Stephen said as the MRI was clear prior to the start of chemo he wouldn't expect to see any cancer given Rory has just completed four cycles of high dose chemo.  If cancer was detected in December there would be little they could do immediately given the treatment he has received over the past eight months.  All the parents on the medulloblastoma email group hate MRIs as much as they love them.  I completely understand why.  The repeat heart and kidney function tests will be timed to co-incide with the MRI.  Rory will be sent 'home' with the Hickman line in his chest.  He will go on a waiting list for surgery at Starship to have it removed.  Children who need lines inserted so they can commence chemo are a priority over children who need lines removed at the end of treatment.  Lines are only removed on Thursday afternoons, and hopefully he will have it removed in December, before Christmas.